Autism spectrum disorder (ASD), commonly referred to as autism, refers to a range of conditions characterized by challenges with communication and social skills, as well as repetitive and restricted behaviors. Over the summer, I had the privilege of conducting autism research in the Psychiatry Department at the University of Minnesota.

My interest in autism began when I moved to the United States eight years ago and learned of the high rate of autism in the Somali community. The prevalence of autism in Somali children in Minneapolis is 1 in 32, compared to the nationwide prevalence of 1 in 68. Additionally, Somali children here are disproportionately diagnosed with “autism with severe intellectual disability.”

In Minnesota, there is a gap between the Somali American community and the autism research community. This gap has led to a lack of research knowledge and awareness about ASD-related issues and reduced community input on research questions. As a result, needed services and resources have not been reaching the community. Recognizing this gap, I wanted to join a lab where research was being conducted in parallel with community advocacy. The blend of research and community outreach I found in Dr. Suma Jacob’s lab is rare.

As a Data Science Fellow, I worked with a team of independent clinicians and researchers on a variety of projects. I contributed to a clinical trial investigating the effects of intranasal oxytocin on social information processing by doing analysis and literature reviews for future publications. I also prepared behavioral data that tracked the eyes of participants.

There are multiple factors that contribute to an ASD diagnosis and I am particularly interested in the genetic components, so I took advantage of the opportunity to shadow at another lab that analyzed the genetics for this study. Additionally, I worked on SPARK, a national study investigating the genetics that play a role in ASD. SPARK aims to recruit 50,000 individuals with autism and their parents. Families can participate from home by registering online and providing a saliva sample. I recruited families into this study and followed up with them to make sure they sent their samples in for analysis.

This year, I am developing my senior project for my Community and Global Health concentration in collaboration with the Jacob Lab. I have proposed conducting a survey of Twin Cities Somali parents and community members to understand their experiences and views on what causes ASD. A similar survey was conducted in Toronto, Canada, which also has a large Somali population, and I plan to compare the results. I hope this and similar projects will help to bridge the gap between the Somali autism community and the research world.

Tasneem’s research was funded in part by a grant to Macalester College from the Howard Hughes Medical Institute through the Precollege and Undergraduate Science Education Program.